Supporting families with special needs
Perhaps it’s because my oldest just got home from his second year at college. Perhaps it’s because last week my middle son turned seventeen. That I can hardly believe. Or maybe it’s because this week is Mother’s Day. Whatever the reason, I’m feeling quite nostalgic.
The other day I was remembering when the kids were young. Back then, they thought I was smart. (Those days are gone.) My children used to look at me as more than an ATM. They thought I was funny. Ok, so my jokes are only funny to young children, but I once made milk come out of my son’s nose. They didn’t used to say I was old back then, and I also wasn’t carrying the weight of an extra person around my waistline. I saw a picture of myself at a resent family event and wondered why no one was trying to free me from my holding tank.
Whatever the reason, old memories of times now long gone started coming to mind. Like when our oldest couldn’t walk very far, so I would carry him on my shoulders. I even fell once and broke my ankle, because as we fell I pulled him on top of me so he wouldn’t get hurt. One time I got too far ahead of the rest of the family and some friends when we were riding our ATV’s. When my oldest and I realized everyone else had stopped we turned back. When we found the others, the look on my younger son’s face was priceless. He had launched his ATV off the road and wedged it between a boulder and a tree. He was so shaken that we put him on the back of someone else’s ATV and let one of our friends drive his. And lest you think all my memories are of accidents, there was the time I took my daughter to the father-daughter dance at our local YMCA. She was so excited; she smiled the whole night.
From my perspective, it’s been one tough month.
I should preface this by telling you that our little farm is my wife’s dream. But – news flash – dreams don’t always come true.
Recently, one of my son’s goats died while trying to give birth. We lost the baby, too. And then as if that wasn’t enough, the bill for the emergency trip to the vet was pretty steep.
Naturally, these things never seem to happen at a convenient time – and this was no different.
This all occurred on the weekend I had planned a special anniversary get-away for me and my wife. I had been pulling it together for months – bought the concert tickets, made the dinner and hotel reservations – arranged for every contingency. Or so I thought.
We got away, but had a difficult time enjoying ourselves. Sleepless for two days coupled with the sadness of losing a beloved family pet has a way of dampening an otherwise happy event.
“Troubles,” wrote Shakespeare, “come not as single spies…but in battalions!”
Lately, I have not been overjoyed with my children. They’re probably not happy with me either. I know they are only kids, but they are driving me crazy! They have all gotten to that age in between childhood and adulthood. Though the oldest is twenty, I still put him in this category because he is in college and still relies on us for his existence, even if he is gone more than half the year.
The things that set me off usually fall into three categories. First are the nuisances. Why do I find dirty dishes in every room of the house? What is so hard about finishing a snack and then bringing the dishes to the kitchen? If by some miracle they do make it to the kitchen, why can’t they be rinsed and put in the dishwasher? If you use the last tissue in the box, why can’t you throw away the box? Or how about getting another one from the shelf so someone else can find tissues when they need them?
Second are the troublesome things. Effort equals grades. Don’t tell me the teacher can’t teach or that he or she doesn’t like you. If you turn in the homework on time and don’t disrupt the teacher’s class, you can sleep through the rest of it. If I buy you the expensive calculator the class requires, don’t lend it out to friends who won’t return it, or who’ll break it. I don’t want to explain for the umpteenth time that money doesn’t grow on trees.
Third are the life lessons. Choose your friends wisely; they make a difference in how you see yourself. A little effort now can change your future; your life is like a bullet shot from a gun: make sure you aim high.
I think these are awkward years for both parents and kids. When our children were younger I would tell them to pick up the clothes on the floor of their room and it would happen because my wife and I said so. Now they think that if they are ok with the way they keep their room, we should be as well. This falls apart quickly when they tell my wife they have nothing to wear; as it turns out, all their clothes are in a pile on the floor. If they can’t tell what is clean or dirty how can we?
It can be a constant fight between us on every front. I get tired of saying, “Just do it,” or theirs and my personal favorite, “I’m not asking I’m telling”.
When I was young my Mom, grandmother, older brother, and sister drove our station wagon from southern California to Guatemala. Yes, the country of Guatemala, the one below Mexico. Every time I tell people we did that, they look at me as if my family was crazy. Over thirty years ago we left Dad at home and took off to the country of my Mom and Grandmother’s origin. My mother and brother alternated driving. I was in the far back on my knees so I could face forward on the backward facing back seat.
Along the way, we stayed with relatives I never knew I had, or at hotels. I have no idea what my parents were thinking as they talked about this trip. Did they think this was perfectly safe? Did my dad worry about us, driving all that distance with no man older than a teenager? If I were to consider driving to Guatemala, the first thing I would think of would be getting killed somewhere along the way. Maybe my Dad was trying to get rid of us?
I can think of all kinds of things my siblings and I did as kids, like riding our bicycles off the roof into the pool, that really were not safe and probably weren’t smart, but we did them.
Guess what happened to us when we did these “not very wise” things? Some of us got hurt! My friend Jimmy lost a piece of his chin in an errant bicycle jumping accident; I broke my hand once or twice; my buddy Charlie broke his leg.
And when I tell my children these stories, they look at me as if I’m crazy! What would possess us to do all these crazy things?
My son and I have been engaged in a long running argument.
Kyle loves being in High School Theater. In fact, he’s gravitated to various theatrical programs and productions, both at church and school, since he was a young boy. He loves the stage and works very hard at it. Bias aside, he’s good!
The pursuit hasn’t been easy. Cerebral palsy can limit his ability to be cast for the physically demanding roles. Prior to high school, he regularly won major parts, but the productions are now more heavily produced and carry a certain level of expectation. Regardless of how competent an actor, no director will tap a disabled person for the lead in the Lion King musical, where the part calls for dancing and lifting fellow members of the play over his head.
Because of these limitations, Kyle usually ends up in the back row of the chorus line or with a small part with a few toss-away lines. He is regularly disappointed, but always seems to take the situation in stride.
If only his parents were so understanding and easy going.
And herein lays the crux of our argument.
Kyle is a very accepting young man and dutifully auditions regardless of the production, no questions asked. I’ve grown frustrated not by the roles he’s won, but by a fact entirely outside his control. Semester after semester and year after year, the theater teacher has continually selected fast-paced musicals, punctuated by heavy doses of singing and dancing. This season’s production, West Side Story, is Kyle’s last play before graduation. I highly doubt the director will cast a young man with Cerebral palsy as the tough guy leader of a high school gang.
In other words, with his physical limitations, my son’s chances of procuring a leading role are non-existent even before the first audition call.
